Because my audience keeps growing, every once in awhile I’ll post on Facebook an older article that I’ve written. Yesterday, I linked to the Doctor Horror Stories our community has shared.
And holy moly…what a response.
So many stories…so much heartbreak.
And all of them speaking to the power of celiac disease and what it can do when left untreated and misdiagnosed.
There was one that really stuck out. It dealt with a child who spent the first 8 years of his life being incredibly sick, doctors who diagnosed him with everything under the sun and a mom who refused to give up.
I’ll let you read it.
My son was diagnosed with epilepsy, juvenile fibromyalgia, depression (they even hospitalized him for depression when he was six. SIX!!), chronic illnesses on top of each other, more than I can list; by the age of six his medical records filled two large boxes (TWO) and he had spent more time hospitalized for “unknown causes” than most adults do in a lifetime!
He had his first seizure at 12 days old, and got worse every day. Twice we were told by doctors to call the family in because he was dying.
He had even been tested for leukemia three times, and had his chromosomes tested for a disorder twice, mostly due to the fact that he suffered from “failure to thrive,” as well as other health problems.
Finally, two months before his 8th birthday, a doctor took me seriously and diagnosed him with celiac. The Dr told me, “I don’t know much about it except that he’s highly allergic to wheat in any form.”
We immediately went 100% gluten free, including foods, drinks, soaps, school craft supplies, etc., and I hit the Internet doing research, quit my job to educate myself on how to save my son’s life.
By the time his birthday rolled around two months later, he had color in his face and energy was quickly coming to him for the first time in his life. In the last two years (since the diagnosis) he has gained a whooping 29 pounds, making him a tall, almost-10 year old, weighing 75 lbs; still looks like a toothpick, but this time he is alive!
All other diagnoses, INCLUDING EPILEPSY, have “cleared up.” Every other diagnoses has been removed, with the exception of epilepsy, because he still has seizures if he comes in contact with gluten.
What’s the lesson here?
Well…if you’re a doctor, get off your lazy ass, think outside the box and put celiac on your list of things to test for.
And if you’re a parent, keep fighting the good fight until you get the answers you deserve.
Kudos to you mom!!
I would love to know how he was tested. Was it blood or an endoscopy? My son tested negative on a blood test, I have Celiac, and the specialist I took him to (after the negative blood test) at Children’s Hospital told me it could be psychological for my son–stress from school causing his symptoms. He told me he rarely does an endoscopy on children. I am about to order a DNA kit to see if he has the markers for Celiac.
Would love input from this mom.
I say find another doctor to do the endoscopy. My doctor ordered the blood test, the DNA test, and the endoscopy at the same time. The blood test came back negative, the DNA showed I had all the markers for it, and the endoscopy was positive. My life forever changed for the better after the endoscopy results came in.
I’m no expert, and I have no idea how old your son is or how much stress he might be under, but every time I hear a doctor blame the symptoms of this disease on stress it makes my head want to explode.
My son is 2. I had him tested 6 months ago after I was diagnosed. The blood test was negative. However, due to some signs I couldn’t ignore – swollen bloated belly, severe mood swings (which are sometimes natural for a toddler-I know), lactose intolerance, and poop that was never solid – I decided to try the gluten free diet for him too. His swollen belly was gone within a few weeks, his behavior improved, and his bathroom issues were gone a few weeks later. Our pediatrician initially encouraged us to do the test and has been supportive of him being on the diet regardless of the negative test results. I don’t want to do an endoscopy because of his age and the fact that treatment would be the same either way. You have to do what’s right for you, but don’t ignore your instincts. It’s hard to find doctors who know anything about this or who are willing to listen, but keep trying. Your son’s health depends on it. 🙂
Hello our son just turned 4 and was diagnosed a few months ago with celiac. He was hospitalized because he’d cry all day long saying his belly hurt and was living off Tylenol and an heating pad. The doctors didn’t believe me that something else was wrong. They kept saying he’s just constipated. I said he’s never had an issue with that he goes 4-5 a day. After 2 ER visits, messed up bloodwork orders that were high and not tested correctly he ended up hospitalized for a cleanout and blood work was done properly and he exceeded the highest level. They don’t know his actual number but we were told he had celiac and that we should get tested too with bloodwork. It was fully confirmed with 6 biopsies taken during an endoscopy. As my mom always says no one is going to advocate for your kids more than you. Keep fighting mama you got this!
Good for you! The medical community is still so far behind that we must be our own best advocates. My best to you and your son.
“Finally, two months before his 8th birthday, a doctor took me seriously and diagnosed him with celiac. The Dr told me, “I don’t know much about it except that he’s highly allergic to wheat in any form.”
o m g
New flash for ya, doc:
You don’t know a damn thing about it if you made that statement.
For the love of mike, Celiac Disease is not an allergy. It’s not an allergy to wheat in all forms…. It’s….oh forget it. I’m just preachin’ to the choir here.
Anyway, Good on you, Mom!!
Glad your kiddo is doing all right.
Glad we are all doing all right, despite the “medical professionals” we all encountered in our very long journey to stop the madness.
Irish, I literally thought the same thing when I read what the doctor said. Clearly he doesn’t know anything about Celiac disease. But it’s great that her child finally got the answer he needed to live.
For anyone who says Celiac disease is not serious, this is the case in point. It’s very serious and sadly this child was diagnosed with a depressive disorder just like I was. I often wonder how many people are busy spending all of their time and money at the Psychiatrists office when all they would have to do is be gluten free.
Better to have a doctor admit he doesn’t know something than to go about making guesses, acting like he knows it. But yeah, lol, I’m a veterinarian and even I know it’s not an allergy!
Any discussion of a biopsy? A little tissue taken from the small intestine could easily show gluten or no gluten.
The one thing I’d tell parents is that they only test for three of the 75 possible genetic markers for celiac. I test negative on the genetic tests, but positive by biopsy.
If you have a kid that you are certain has celiac and the blood test does not confirm it, the biopsy might.
Thanks for this comment! I tested negative on both serology and on the genetic test, but I must have found a good doc because he’s still doing the biopsy. My symptoms aren’t bad compared to most, but I have occasional stomach trouble. (Some of the other things I have may be extra intestinal manifestations: depression, ADHD, eczema.) Fingers crossed that I figure this out!
I just have to say this:
Genetic markers for celiac are not diagnostic tools.
They are used most often as “exclusionary”… BUT some people do not have the so called ” celiac genes” HLA-DQ2 and DQ8 and they still have Celiac.
Blood tests can be falsely negative. (I am one if those seronegative celiacs)
A GOOD gastro doc worth his salt can perform the biopsy and still…never hit the mark. Intestines are long, winding things.
They need 8-10 samples.
Too many variables.
All I know is….
If my child had failure to thrive or a bunch of symptoms that scream gluten intolerance ( and I have diagnosed celiac ) and all testing is negative….I would put that kiddo on a GF diet and never look back.
JUST IMHO
So why do you think it is that the blood tests are so unreliable? I keep seeing this come up in what little reading I’m able to do with two small kids around, but I’ve never found a good explanation. My bloodwork was positive right off the bat but when my son’s came back negative I thought the gf diet might still be worth a try for him too. In my eyes, it’s made a world of difference.
I wish I knew why some people’s blood serum antibodies do not register on a celiac panel. The research centers state the testing is pretty darn accurate.
I can only tell you honestly that several celiacs I know had negative panels but positive biopsies.
In children, the antibody levels may not be detectable YET. So, the panel comes back negative, but the child is suffering numerous symptoms associated with gluten intolerance. This is anecdotal, I know, but I can tell you of several moms who reported to me their children’s migraines, seizures, ADD, behavioral issues, acne, failure to thrive and bowel problems ALL resolved off gluten. Coincidence?
I don’t think so. 🙂 I applaud all Moms who take matters into their own hands to save their children’s lives.
There are studies that show that people with DH, the skin form of
CD may have negative test results, but the majority of them had
villlous atrophy.
So what can we rely on? Savvy doctors who look at the whole picture:
genes, blood panels, biopsy, symptoms and medical history–and the biggest factor of all–resolution of symptoms of gluten. This new protocol was supposed to be implemented after the big celiac guns all met back in 2012 to determine how best to diagnose celiac disease.
The report is really interesting, if you guys want to read it.
http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf
Dr. Fasano himself has said “we don’t really need this one protein”.
Doctors will say “but you need the fortified wheat products to thrive and a GF diet will be deficient”. That’s nonsense. A good balanced diet will give anyone all the nutrients they need!!.
Sorry, forgive my tangent there. I just get very upset whenever I think about little ones sick and in pain and knowing that the doctor will not even consider a simple dietary change to see if it will make his little patient well. Makes me crazy.
.
Yeah, it’s crazy that so many doctors claim you need regular wheat bread for the nutrients. How good can it really be for you anyway if they have to add all the nutrients to it?
And I’m not claiming to know about anyone’s situation, but I think it’s a stretch to blame these symptoms on stress – especially when it’s a child. I just don’t remember having real stress at that age. And if it is stress, maybe that stress comes from constantly feeling like crap. It sounds to me like the doctor is just too lazy to keep digging to find the real cause.
I agree.
I knew a kiddo with no eyebrows once. Mom told me she was pulling them out and that she sometimes peed the bed still and was wide awake half the night. She was quick to anger and cried a lot.
She was 9.
Why on earth would a 9 year old be “stressed” so much that she had insomnia??
Because she felt like crap, that’s why. She was in gluten head mode.
When I was at my worst about 6 months ago, my son started having insomnia too. He was actually waking up every night just screaming and inconsolable. I could tell he was in pain, but he didn’t want to be held or comforted at all. It would take at least an hour to get him calmed down and my husband or I had to stay in the room with him all night to get him to go back to sleep. This went on for almost two months and on top of that, he wasn’t napping much in the daytime either. It stopped completely when we put him on the gf diet. I don’t think it’s a coincidence either. It never ceases to amaze me how this stuff can affect our bodies.
If I had not lived it all myself, I might find it hard to believe too.
I was completely out of whack–physically & emotionally–and my body and brain was really messed up. I am back to “me” again.
So glad you and your son are doing better! 🙂
You’re a wise woman.
Thank you Irish! Glad you are doing better too! With all of the doctor horror stories out there and knowing how long it takes to get properly diagnosed, it’s so good to hear that healing can take place. 🙂
On a side note, I don’t think I’ve ever been called wise before! 😉
And Gluten Dude, your blog has been an invaluable resource for me this first 6 months and I know it has been for many others as well. Thank you for giving us all a place to vent, laugh, and share knowledge and resources.
I had a thought…
Jess ( a celiac and a doctor)
wrote about NCGS in children on her blog and I am sure she will not mind if I link to it.
Even if a child does not have celiac, gluten can very well be causing havoc.
http://www.thepatientceliac.com/2013/11/22/non-celiac-gluten-sensitivity-in-children/
Thank you dear IH for sharing my link. Most doctors are unaware that NCGS can occur in kids, since this journal paper (the first on the topic) was just published last fall. It’s a reminder that even if a child does not have celiac disease, that if they have NCGS, they can get just as sick. Research in adults has shown that NCGS can be associated with some pretty scary neurological symptoms.
Also, I am one of the “rare” DQ2/DQ8 negative celiacs, so if I had been screened just on the basis of genetic tests, I would have been missed (I found out I didn’t carry the main celiac genes after my diagnosis!)
I think this kind of article is SO important. Too many kids and people are shamed into feeling it is their fault or it isn’t real.
I hope it’s ok, but i would like to link my daughter’s story I just wrote about last week.
Her symptoms are not as severe and it took years as well to get her diagnosed… all while being told we weren’t doing things right. Trust your paternal instincts!
http://sliceoforangecounty.blogspot.com/2014/01/does-my-child-have-celiac-disease.html?m=1
I might as well open this can of worms – I’m just curious if anyone else had experience with child abuse and gluten issues?
When I was a kid, I had every gluten symptom imaginable, and went to the doctor several times for tummy trouble, endured a lot of invasive tests and useless medicine (including the elderly male doctor shoving his finger up my 8 year old arse), and ultimately my parents decided that I had a “weak constitution” and anxiety issues. They tried to fix it by frequent spankings – lots and lots of spankings. Feel sick and can’t eat breakfast? Spank. Won’t get on the school bus because afraid I might barf? Spank. Won’t eat dinner? Spank. Can’t sleep due to leg pain? Too bad. Diarrhea at school? Tough it out.
I’m not trying to play the world’s smallest violin here, I turned out fine, except my relationship with my parents never recovered. Also, keep in mind that this was several decades ago when such parenting was more standard.
So yeah, lessons learned – there is no such thing as a “weak constitution” and hitting your kids doesn’t make stomach aches go away.
So sorry Anna…
oh Anna, I am sorry to hear this. I cannot imagine spanking a child who is unwell, but if they thought you were just being “difficult”, they did what most stressed out and unenlightened parents resort to.
I imagine that’s still going on in homes right now. 🙁
By sharing your story, you may well have opened some eyes this morning. Thank you. May I share something with you too?
My mother recently said she was sorry that she told me my leg pains when I was little were “just growing pains” –because that’s what her mother told her. My mom was suffering from GI stuff all that time, too–poor thing–but she thought that was “just the way it is”. At 86, off gluten after my DX, she feels the best she has in years.
She said she never knew why I was always pushing food around my plate or getting “stomach bugs” (and frankly, I heard “tough it out” a few times and was sent to school anyway) but I was never spanked or abused or made to feel as if I were not being heard. I also endured those yucky doctor exams but was told it was appendicitis, etc. (it wasn’t) Fortunately, I had a very sympathetic Dad (who had gut issues and anemia all his life).who gave good hugs.
Often, I hear similar stories from other celiacs and I think… the parents are also probably having symptoms or are ill-tempered from gluten themselves… and have no idea why they are so easily angered.
I send you all kinds of cyberhugs.
Thanks for your kind words, y’all. I put that out there to see if anyone else had the same experience, because I’ve never seen it discussed anywhere.
I will say that life got better, which is a testament to human resiliency under bad situations. If I have kids you can bet I will be breaking that cycle.
Oh, and the stories I could tell about having Epic Diarrhea at school…. Including one where a handsome young man asked me if I ‘fell in’ and me being mortified. Ah, junior high….
Hey Anna- I’m a little late with this thread, but I too was in high school when I became symptomatic. My parents thought I was under stress, which I was, but not for the reasons they thought. Doctors thought I was on drugs, which I wasn’t, and my class mates just didn’t know what to think. Except for the times I’d clear a room out, as in everyone evacuated the class into the hall after a nice celiac fart. And there were the times I’d have to haul ass out of class no matter what was going on to have diarrhea. It’s just that boys (and a surprising number of men) feel the need to mark territory by pissing all over the toilet seats. My need to dispense some diarrhea precluded wiping the seats down, so I’d sit in someone else’s urine while a geyser of yick exploded from my bottom which was so sore from all that caustic diarrhea that I bled and nearly passed out from the pain of wiping with that rough TP they stocked in the bathroom. To this day, thirty three years later, I have to use wet wipes.
The day before I went into the hospital I was having diarrhea and vomiting at the same time. I tried to aim between my legs with so-so success, then I passed out. Someone fetched my NJROTC instructor, and he and a social studies teacher cleaned me up and pretty much carried me to the office. Happy times, from 1977. I’d rather die than go through any of that ever again.
Hi all, I am fairly new to the gluten free thing. The more I read the more ‘a-ha’ moments I have. I am self-diagnosed gluten intolerant. (as in I’ve lived the past 6 years with debilitating digestive problems, fatigue, mental fogginess/sadness/anxiety, back pain and on and on…) I’m mostly off gluten. I still accidentally ingest it on occasion on get fatigues and constipated. I am concerned about my kids though. My eldest is 8 and has aspergers, mild ADD, and behavioral issues. He seems pretty big and healthy for his age though. He doesn’t complain about tummy aches and seems to have normal BMs. My five year old has dry skin, eczema, anxiety, sometimes hyper-activity is very thin and often claims to be ‘full’ after eating just a few bites of food. He also seems to have somewhat overactive bowels. To break it down- he poops a LOT. I am so torn about this. Am I denial here? I don’t want to put them on a gluten free diet if I don’t need too. It would just make life so tough for them (what kid doesn’t love burgers, pizza, p.b. & j.’s, cookies, etc.?) I am not super anxious to bring them to a Doctor because I know how helpful (NOT) they were in finding out what was wrong me. Any thoughts or advice is appreciated. 🙂
Get them tested. Then, go from there.
Irishheart- I’ll schedule an appt. 🙂
This is a sad story! I too went through something similar. I fought and fought until we found out it was Celiac Disease. Now, she still has issues with other symptoms, related to Celiac or not, I’m going to find out. I’m in the process of finding her a new doctor, because when I ask for blood tests for ruling out certain things she just roles her eyes, sad, really, really, sad!
I HAVE SEIZURES LIKE THAT TOO. well, there absent seizures. I just do AFB (away from body) for about 15 seconds. It hapends to me proboly because some docs gave me a brain injury, and the parts of you that have been damaged before are targeted.